Tag Archives: RN

Over recent months or even years, many people have become irritated, bemused, frustrated, confused and perplexed by the Alzheimer’s Society’s online chat room also known as Talking Point. Posts have been dumbed down and members dumbfounded by many of the decisions made by the appointed representatives of the Alzheimer’s Society, working and operating its online forum.

Many people were hoping that things had changed, once the Alzheimer’s Society had rid itself of what it perceived to be irritating members who were brave enough to challenge the Administrative nonsense going on. Similar to the way that Julie Bailey and ‘Cure the NHS’ have challenged the brick walls of care, resulting at long last in the Francis Report.

It is so easy for the Alz Soc to ban forum members who challenged the ignorant actions of its Administrators and Moderators. The Alz Soc compromised many members by editing and/or deleting their posts, even if they only referred to Winterbourne View, or … wait for it …. the British Geriatric Society, or even Peter Carter of the RCN. All mentions were obliterated without being able to be questioned by the members. Members who posted about BSE or CJD and dementia-linked situations were also deleted and obliterated.

It was all too uncomfortable for the Alzheimer’s Society to contemplate such matters.

It is far too comfortable for the Alzheimer’s Society to silence those members who had the guts to challenge matters.

It makes me wonder how the Alz Soc will react if/when the latest horse-meat scandal comes to evidence a connection between dementia and the introduction into the human food supply of a drug called Phenylbutazone – a drug that is now only used in the care of horses but which was previously used in the care of human beings who also happened to have arthritic/rheumatic joint problems. The experimental use of Phenylbutazone in humans was disastrous and resulted in death, and it also resulted in Phenylbutazone being banned for use in human beings suffering from arthritis/rheumatism. That was circa 1975, so it’s possible that any use of Phenylbutazone now in human beings is heavily restricted, controlled and monitored. I hope so.

The Alz Soc shed the skin of those that it felt irritated by, namely those who posted examples of sub-standard care. All mention of Winterbourne View was eradicated from the forum, as were posts mentioning Southern Cross, to name but a few.

Almost overnight, it became acceptable for people to name Stafford Hospital, to call social services ‘social circuses’, to talk of ‘lies and more lies’ when referring to social care systems that the posters had come by. Even mention of MPs was suddenly allowed, whereas previous posts mentioning similar had been edited and/or deleted. So members were thinking that things may be changing and on the up.

The forum Administrators and Moderators prod and poke and provoke. Until such time as the Alzheimers’s Society’s appointed Administrators and Moderators can ban thinking members. It’s so much more comfortable for the Alz Soc to leave its own comfort zone untouched and unsullied by those Members of the Alz Soc who would like questions to be answered.

The latest example goes beyond the acceptable when it comes to caring about dementia. [I choose not to use the word Alzheimer’s because it denies recognition of all other forms of dementia. It also sweeps away most of the important factor that people living in the UK care about at present.]

It is all swept away by someone who has no idea what it means to be trying to achieve quality care in the UK.

“While this may be your view, that’s all it is – your view. Some care homes may be like this, some are not. To state that all of anything is untrustworthy is inappropriate in my view.”

Is that the view of the Alzheimer’s Society? Is it the view of an appointed Alzheimer’s Society person? Is that the point of view of someone who has not one single clue about what it means to be living in the UK with dementia and caring about those who are living in the UK with dementia, let alone those who are living in the UK and still dealing with the care home system that is so sadly lacking in quality and standards of care.

It is the point of view of someone – an online forum Moderator, appointed by the Alzheimer’s Society – who has never had any direct experience of the care home system in the UK, who has never had any experience of social services in the UK, who has never had any dealings with that which most people are dealing with when it comes to care in the UK.

But someone who is still given full reign to spout about that which affects every single person living in the UK.